Information and Inspiration: creating the Right Click online resource for women and girls.
Dr Catriona Stewart, PhD MSc PGDip, Autism Advisor, Scottish Autism
Right Click for Women and Girls was developed to provide support, information and inspiration for autistic women and girls, their parents and carers and the professionals who may be involved in diagnosis or ongoing support. Supported by the Scottish Government through their Scottish Strategy for Autism funding, Phase 1 was completed in May 2016. Work on phase 2 has now begun.
The development team consisted of Charlene Tait, Director of Autism Practice and Research at Scottish Autism and myself who was commissioned as academic advisor to the project. The idea for the programme arose during the Scottish Strategy Autism research seminar series at Strathclyde University in 2014 when I presented on my PhD research that focused on girls with Asperger’s Syndrome and anxiety, completed in 2011. Underpinning that earlier study was the goal of making this previously invisible population visible, about giving them a voice and then listening. Conceived as a practical resource underpinned by research, the programme has been built around themes and issues identified through a number of routes, the rationale for which and methods involved are outlined below.
What is being increasingly recognised, is how little is known about women, girls and autism. What has also emerged over the last few years is a range of issues affecting women and girls and their parents and carers - as well as the practitioners working with them – with little recognition, support or practical resources in place for them. Information, then, was one goal of this Right Click programme, gathering information, adding to the knowledge-base, highlighting areas of importance where perhaps more research can be done, resources focused.
The other goal, defined as ‘inspiration’, is a response to emerging evidence about the effects of diagnosis of autism or Asperger’s Syndrome, for people of all ages, but in particular young people. This has raised increasing concerns about the issues of stigma and narratives of negativity around autism and how these impact on self-esteem, confidence, life-choices, individual and personal outcomes.
What was core to this project was that it should be grounded in the experiences of autistic women and that what was developed would be cogent, supportive, life-enhancing. It is certainly about increasing knowledge and disseminating information, but more, presenting a positive, outcome-oriented resource.
The project involved autistic women and girls from the start; grounded in earlier research the areas covered within the Right Click online survey we created arose out of many interviews and group discussions held over a period of years starting with earlier research work carried out by the team, and my involvement with SWAN: Scottish Women’s Autism Network. These areas have been expanded on and developed throughout the Right Click project and continue to be so.
When considering methods, there are always questions to be answered before embarking on any research. ‘Evidence-base’ is a much used term, often bandied about by researchers, medics and the media, and usually taken to mean ‘true’ or ‘real’. What should always be asked and often is not, is what kind of evidence does that mean and whose reality does it reflect? How was that evidence gathered? What does it tell us and how can it be applied to benefit those being researched?
Quantitative and qualitative methods of research should complement each other: one tells us about the whats, the whos, the how manys, the numerical means and statistical probabilities; the other tells us about the whys and the hows, describes the complexities, gives us insight into the lived reality for individuals and can point us towards new areas for exploration.
The Right Click programme for women and girls used a mixture of methods. Firstly, a survey was developed, which was an online 28 item questionnaire snowballed out via various networks, including SWAN, and autistic individuals with large personal networks. The questions were made up of a combination of demographics e.g. age, diagnostic status, numbers of children if any, and any diagnosis for them, ethnic background. There were multiple choice questions and there were also open-ended/self-report items. The survey was disseminated in two waves, the first gathered 39 responses from women and parents of girls; the second was targeted at autistic women only and received 35 responses. I also ran a number of focus groups with women, autistic women who are mothers and two schoolgirl groups; these were all recorded, anonymised and transcribed.
What was created was a wealth of numerical and rich text data, with a combination of quantitative data analysis (thanks to Bonnie Auyeungvi of Edinburgh University for invaluable input here) and qualitative thematic analysis. The quantitative survey data largely serves to identify some of the challenges, the problems and areas of concern currently involved in being a woman or girl on the autism spectrum.
These are crucially important as a start in highlighting where there should be further research and most importantly, resources allocated. For example, difficulties in accessing health care for women, across the board, but specifically antenatal services, challenges in the experiences of giving birth and anxieties around post-natal support were all identified.
What the qualitative data, on the other hand, has served to illuminate, is the ‘whole picture’ aspect of autism in women and girls, that each and every individual has strengths and challenges; needs and assets; individual personalities, humour, determination, love for their children (where they are mothers), insight, aspirations and achievements as well as difficulties.
The clearest emerging picture is of a population who, because they have been largely, perhaps not ‘hidden’, but certainly under-recognised, first and foremost need much greater awareness of their needs and crucially, not just awareness but understanding and support. In every area identified, the key message was one of need for increased knowledge in professionals e.g. in diagnosis, health care, education. Also better understanding and acceptance within the community at large, for example, in employment, accessing public spaces and activities, parents’ and other community groups, social services.
There is much to be proud of in the Right Click programme for women and girls. It is innovative and unique in a number of ways: interviews with and presentations by autistic individuals such as Debi Brown, Lana Grant, Dr Dinah Murray, Sarah Hendrickx, Dr Wenn Lawson and Lynne Moffat; the way it address some of the more prosaic but so important and often problematic aspects of daily life for young people on the spectrum (and many older ones too). Personal grooming, sexual health, general health, food and nutrition, are all areas that are covered. Year one of the project has made a start on some of these things; in year two there will be much more.
More research is under way, there will be more practical skills items included and more interviews. There are plans for a range of new areas identified over the course of the first year; there will be more on younger women and girls for example. Built into this resource is a process of ongoing review and assessment and it will continue to be built around input from autistic women and girls who are the source of such inspiration!
Resources and Links
Stewart C. (2012) ‘Where can we be what we are?’: the experiences of girls with Asperger syndrome and their mothers. Good Autism Practice GAP,13,1, pp 40-48.
Van Wijngaarden-Cremers, PJM et al J Autism Dev Disord (2014) 44:627–635
Westman Andersson, G., Gillberg, C. & Miniscalco C. (2014). Pre-school children with suspected autism spectrum disorders: Do girls and boys have the same profiles? Research in Developmental Disabilities Volume 34, Issue 1, January 2013.
Snow (2013) Beyond Visions of Repair: Evoking a parlance of capacity and competence in research on Asperger Syndrome and Schooling.
Humphrey, N. & Lewis, S. 2008 `Make me normal’: The views and experiences of pupils on the autistic spectrum in mainstream secondary schools. Autism, 2008; 12; 23.
School of Philosophy, Psychology and Language Sciences, Edinburgh University.